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Friday, June 29, 2012

Ask Me: "Why Is This Happening?"

Recently I have attended some trainings about dementia care from Dr. Cameron Camp who's work has really changed dementia care from leaving people to sit in a bed all day, to teaching people with dementia new things and getting them involved in activities. His approach helps them deal with their illness better, increases quality of life, decreases medication, and decreases stress on both the person with dementia and their caregivers.

Dr. Camp taught us two things which he said he never wants us to forget:

1. When someone presents with a "problematic" behavior ALWAYS ask: "Why is this happening?"
2. The answer can NEVER be: "Because this person has dementia."

This is because way too often when someone with dementia is agitated, like maybe yells for the same person at the same time everyday, typically the first response is to ignore them or medicate them to the point where they are so sedated they stop yelling. Then this behavior happens over and over again every day and you never solve anything.

Instead, you could stop and ask the person with dementia "Why is this happening?" Such as, "Why do you call for Emily every day at 2:00?" It might be because that was the time her daughter Emily came home from school every day. It might be because they need help with something at that time each day but don't know the name of anyone in the assisted care facility so they yell a random name until someone comes to help them.

For people who can not respond to the "Why?" question, you can ask yourself, "Why is this happening?" Maybe someone wanders and is agitated at night and when you ask yourself why, you realize it is because they were a night shift nurse all their life and they think they are at work.

Once you know why it is happening, you can think of solutions. Such as teaching the person who yells the name of their nurse (yes, this can be done) or giving the agitated wanderer work-like tasks to do at night to calm her. If you always just think the behavior is "because the person has dementia" then you automatically stop looking for a way to help them and they spend their life agitated, sad, and unhappy. No one deserves that.

When I was at a different dementia training this week, a caregiver was talking about a problematic behavior from one of their dementia patients. So, I suggested Dr. Camp's teaching to first ask "Why is this happening?" The caregivers response was that she would never ask this patient why it was happening because not only did they have dementia but they also had mental illness like anxiety and Obsessive Compulsive Disorder and you don't ask people with mental illness something like that. I said yes, you do, that is all the more reason to ask why. She did not like that answer and insisted that someone with mental illness should never be asked "Why is this happening?"

This really upset me. Why not ask the patient why? She deserves the same respect as everyone else, and just because she has mental illness does not mean she has no idea what is going on, should have no agency in her life, and should not be given the opportunity to say what she needs. Also, this caregiver was assuming that the answer to "Why is this happening?" would be "Because this person has mental illness." However, if we expand Dr. Camp's teaching to mental illness, you can't just say something is happening "because someone has mental illness" because that stops you from ever trying to help them.

Here is a simple example. I have had anxiety for my whole life over many different things and I have had many problematic behaviors because of it. For instance, when I was little, I did not flush the toilet at home. For my parents, this was a problematic behavior. Now, if you didn't ask why this was happening because I have a mental illness and you thought I didn't deserve to be asked that question, then you could never have helped me.

E.T. - Photo by Jeff Norris

If someone had asked why, they would have learned that the movie E.T. scared the heck out of me and for some reason I thought the flushing of the toilet sounded like a spaceship and E.T. would come out of the toilet if I flushed it. Due to the anxiety, you may not have been able to rationalize my fear away, but if you asked why you could have thought of ways to help me. Maybe a special "anti-alien" spray (which really would have been air freshener) would have made me think E.T. could not come out of the toilet - I was only three years old at the time. (In case you are wondering, I do flush the toilet now, but I still can't look at E.T. without panicking.)

Just because someone has mental illness, that does not mean they can not speak for themselves and don't deserve some agency in their life. True, our answers may not be logical to you but they are real to us and there may be a way to work with the illness and make our lives better rather than letting us suffer just because we have mental illness. And sometimes when you ask us why (nicely by the way) and we don't know, if you think about it enough, you might know why. I might say I don't know why I am manic but my husband may notice that the mania started when a stressful event occurred in our family. Then we have something to work with.

Asking why is really about discovering the triggers of your mental illness, which psychologists say is essential to do in order to manage your disorder. It can help you avoid triggers, work around them, and find new ways to deal with them so you can still have a meaningful life even with mental illness.

Dr. Camp says you need to change the environment to normalize it for the person with dementia so they can be as successful, happy, and healthy as possible. We can do the same for people with mental illness- if we are willing to do two things:

1. When someone presents with a problematic behavior ALWAYS ask: "Why is this happening?"
2. The answer can NEVER be: "Because this person has mental illness."

1 comment:

Katie, I"ve been following the discussion about mental illness on the UUMA-Chat, and came over here for a look at your blog post, as you suggested.

This is wonderful, refreshing, important information. So very important for lots and lots of people to know, rather than behaving like the nurse you describe above. I'm thinking especially about chaplains in behavioral health units, but actually this is relevant to any of us in parish ministry.

Thank you so very much -- more than I can express -- for teaching us what we need to know, not only as religious professionals but also as human beings in relationship with other human beings.

Rev. Katie Norris

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About Me

Executive Director for the Carolyn L. Farrell Foundation for Brain Health. www.farrellfoundation.com
I am a Unitarian Universalist minister, a wife, and a mother. My community ministry focuses on providing life enrichment programs and advocacy for people with dementia and mental illness.